Alright, you guys wanna hear a funny/gross cancer story?
So one big headache throughout this whole thing has been my gallbladder. Whether due to the large stone in it or the proximity of the giant tumor in my liver, it’s had a tendency to flare up and cause a lot of pain
Normally they’d just go in and take it out, but the cancer complicates things. If they tried to remove it and things went south and they had to open me up, it could delay chemo by a lot
On the other hand if they just left it and it flared up and got infected during chemo, that could be life threatening
So they split the difference: they put a hole in my belly and stuck a tube in the gallbladder leading to an external drain. It’s called a cholesystostomy. Functionally it works a lot like a colostomy bag, but for bile
Kind of a pain in the ass but I don’t really notice it most of the time, it just kind of dangles down and hangs out by my thigh. Here’s what it looks like, for the morbid and curious:
Now, that dark green shit is the bile, and once a day I have to dump it out into the toilet or whatever. There’s never a lot, maybe 20-40 mls or so. But it’s enough that you damn sure don’t want to spill it accidentally.
Well.
You see that teal colored cap at the end of the bag? That’s the only thing holding the bile in. And baffling to me, it doesn’t screw or lock or snap or anything. It’s just a stopper, held on by a little pressure.
Very easy to see how if your leg is moving one way and the bag is getting pulled the opposite, it would be easy for that top to pop right off and let all the contents out. And that’s *exactly* what happened at 11 AM today as I was walking down the hall with my five year old.
All of a sudden I feel a warm rush down my leg. It’s the bile, pouring out and pooling on the floor. The kid shrieks and runs - he knows what it is but the fact that there is WEIRD STUFF coming out of DAD’S BODY is obviously unsettling to contemplate when you’re five.
I’m trying to like, roll up my pants to cinch the bag and avoid more spillage. But now the dog is thundering down the stairs toward me because he hears a ruckus, and there’s nothing a dog loves more than a ruckus.
And he sees me kind of hunched over the floor - very exciting! - and then he notices the strange green puddle that sort of smells like me but also sort of doesn’t, in a *very* interesting way, and he decides he must investigate immediately: with his mouth.
So the kid is screaming. The dog is joyfully experiencing a new taste sensation. And I’m trying to crabwalk to the bathroom to get a handle on things.

Anyway that’s a Saturday morning in the life of a lymphoma patient, I hope your day has been similarly #blessed

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More from @_cingraham

Dec 11
Twitter files is just long form mod/forum drama, nuclear-level hysterics over minutiae that’s hilariously inscrutable to outsiders.
Every tweet in every breathless thread reads exactly like this to me Image
And you can’t try to argue with any of these guys because it immediately devolves into that 129-post bodybuilding.com thread where they fight over the number of days in a week Image
Read 4 tweets
Nov 23
Cancer update, and it's finally a good one: the tumor on my bile duct is not the extremely aggressive form of bile duct cancer it appeared to be, but rather a garden variety lymphoma mimicking a cholangiocarcinoma.
The difference treatment-wise is night and day: they can actually treat this type of lymphoma, and completely cure it in most cases. I woke up yesterday assuming I'd be dead within a year, and went to bed with a high likelihood of being able to live a normal life after treatment.
This kind of thing is so rare it wasn't on anyone's radar prior to the latest biopsy. It's kind of turned our life upside down in the best way, like we'd been looking into hospice options and everything. Things were looking extremely bleak.
Read 7 tweets
Nov 6
Quick cancer update: the transplant was recently ruled a no-go. Latest scans show the tumor is bigger than initially thought 1/n
Other options now include chemo, immunotherapy and some more esoteric stuff. We’ll have a path forward soon. We can also finally get this stupid gallbladder out, which is great because it flared up last week in a really unpleasant way
Other than the gallbladder I’ve been feeling physically great. Trying to bike a lot to keep energy and immune system up. And also it’s a bit of a relief not having to worry about getting a major organ removed anymore lol
Read 6 tweets
Oct 13
Hey everyone. I've got kind of a crappy health update to share.

I'm being treated for bile duct cancer at the Mayo Clinic here in MN. As far as cancers go it's a bad one, right up there with pancreatic cancer in terms of grim overall prognosis. (1/n)
About 6 weeks ago I started feeling crappy, and then I got itchy all over and then my eyeballs started turning yellow.

Doctors initially thought it was due to a gallstone, but subsequent imaging showed a large mass in the liver squeezing my bile ducts shut.
This tumor unfortunately can't be removed -- it's too big, and it's too close to some critical veins and arteries. The only real curative option at this point is a liver transplant.
Read 9 tweets
Oct 6
My understanding -- and I could be wrong -- is that this would initiate a complex bureaucratic process that will take months or years to unspool. Plenty of places for DEA to gum up the works. brookings.edu/blog/fixgov/20… Image
"asking DOJ and HHS to initiate the process of reviewing" is a long, long way from "legalizing" or even "de-scheduling." But that could change depending on how much pressure Biden wants to exert
The cynical read is that the admin will make a show of "reviewing the evidence" and decide to keep things just the way they are. The DEA published a 66 page document advocating for marijuana's continued Schedule 1 status as recently as 2016. deadiversion.usdoj.gov/schedules/mari…
Read 4 tweets
Aug 20
Minnesota police took nearly $11 million in cash and other property from people in 2021. Many were never convicted or even charged with a crime. minnesotareformer.com/briefs/minneso… Image
Defenders of the practice say it’s needed to disrupt criminal organizations like drug cartels. But more than half of forfeitures involved property worth less than $1,000, suggesting they’re not going after Pablo Escobar types minnesotareformer.com/briefs/minneso… Image
That said, seizures of small amounts of cash dropped sharply in 2021, likely a reflection of a reform bill passed halfway through the year. We’ll need to wait for next year’s data to see how it fully shakes out. minnesotareformer.com/briefs/minneso…
Read 5 tweets

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